Wrap Up of 2013

Is it over yet??  
Almost, not quite.

I'm hoping that the crisis that began this year doesn't do an encore appearance. I'm hoping that I won't need to revise this piece before Jan. 1. 2014.

Here I sit, in my room. On my computer. TV on. Cat at my side.
Not much seems to have changed over the the past year, or since my last update in March. It's just more comfortable for my to be in my room, that is warmer than the rest of the house. It is a dark, wet winter day and we can't afford the cost of heating the entire house to a comfort level.

I had surgery to remove my gall bladder in early April of this year. Almost immediately my health went into a recovery mode. The post-op doctors visits had the doctors apologizing to me for the five years of misery that I suffered from a diseased gallbladder. The pathology report had read of the scarring of many infections and stone passings, chronic inflammation, and an organ filled with "innumerable small yellow and green stones". The only good comment was that there was no indication of it being septic at that time.

I have been left with damage to the pancreas and liver and will have to take digestive enzymes for life as my body no longer produces the needed enzymes for digestion. Thankfully many drug and supplement shops carry them. Not all brands are of the same quality and I must be careful what I buy. 

I did have the best summer that I had in over five years. My GP went from advising me to look into end of life options to amazement, saying that he felt that I was doing better than I had in the past ten years.

Still, I have a body that has problems that cannot be easily overcome. The nerve damage of the childhood polio. The arthritis that has continued to eat away on my joints and pinch nerves. The IBS/IBD issues. I had a weakened body deconditioned by being bedridden. The problems with damaged mitochondria didn't suddenly resolve themselves. I still was battling three eye conditions that threatened to steal away my sight.

It was a good summer. On weekends we would spend a day out going to parks, museums, beaches, and off to picnics. I was able to garden more. I could do my artwork and sewing crafts again. A few hours a day of activity was a huge improvement upon none.

By September I was done in. A summer flu bug was enough to trigger an end to the recovery cycle and I was back into a relapse. Since then it's been back to a couple of hours of expendable energy a day, and that gets directed to use in the kitchen. I enjoy being able to cook from scratch, and with our current levels of income if I don;t cook well then we do not eat well. Since my husband now works 7 days a week at two part time jobs he needs the best nutrition that I can give him. My fragile health also needs the best that our limited resources can provide.

Also in September I had my visit with my eye surgeon. My glaucoma had gotten worse and urgent surgery was needed. I had laser surgery to drill small holes in the iris of both eyes to drain away the excess fluids of the eye, which was declared successful. The surgery, although minimally invasive was traumatic. Only one eye was adequately numbed. In the right eye it hurt like hell as jolts of red lightning seared into my brain through the eye. It was all I could do to not scream, but I have had a lifetime of practice stifling my screams. The surgeon gave me the option to stop and reschedule but I said no, do it now before I lose my nerve. Another jolt and it was done. Again she asked if I wanted to stop as the left eye needed to also be done. Again I said I wanted to get it over with then. With that eye there was a yellow-while light and a slight sense of pressure and nothing more. I still have the cataracts and the chronic dry eye/sjogrens syndrome attacking my vision slowly. My world is slowly getting darker and hazier. The surgeon asked me at the post-op if I wanted to deal with the cataracts soon since I was having noticeable double vision issues. I declined as the thought of another eye surgery that day was overwhelming. So I wait until next spring to see how things go. The same for anything more than the OTC eye drops for the dry eye that has begun to cause scaring to the cornea.  Some days I need to use the drops more frequently than others, as my eyes hurt as if I had gotten something caustic or abrasive in them.

As I said earlier, my house is cold. There is only so much money to use for  everything that we need money for. Thankfully the climate here is mild, for Canada. Some years we do not see snow, but this isn't one of those. Part of the home is heated with electric baseboard heaters. Most of the house is heated by oil. My bedroom has a heater. The rest of the house gets minimal heating, upstairs that is. Downstairs the rental suite is electric heated. Our hot water tank is also oil, and once the oil tank is empty we don't know how we will manage to come up with the fund to buy more. So we conserve what we can. The house doesn't freeze, even if the the temperature brings pain to my body. It would be nice if I could have nightly hot baths to ease muscle spasms and pull the cold from my bones. But I can't and there's nothing that I can do to change it. If I gave up my TV and internet it wouldn't make much difference money wise, but would be devastating to the quality of life for me. Since I cannot get out in the world I need to be able to bring the world in to me. Spending 20 hrs a day alone with my cats doesn't help much mood wise.

I still have no contact with my adult children. I cannot say that I want any contact. I fear such contact will just open the yet unhealed wounds wide open again. I am a year into the 18 month long cycles of grief and do not wish to have to start them all over again. I cannot bring myself to trust anything about either of them. There has been no indication that contact would be in any way safe for me, but instead indications have led me to believe that it would be anything but. I have little contact with anyone outside of my online family and friends.

 I am still too fragile to tempt crisis. I tried going out to a Christmas party for one of my husbands jobs. It was too much. Too much sound. A rapidly spinning disco ball flashing light around the room triggered temporal lobe seizure activity. Then they spring upon the group that they had hired a murder mystery dinner theatre group for the evenings entertainment and that someone in the room had a pistol loaded with blanks, that would be fired sometime that evening.. so don't panic when it goes off or when people drop apparently dead. Thankfully hubby noticed that I was looking as if I was in distress. The food was just being served, over an hour late. I needed to leave. Guns and I do not mix. PTSD issues. They hit, panic upon seizure activity. I could barely control my body well enough to leave the hall.  I don't get grand-mal seizures very often but it was a close call that night. We stopped at an A&W for a burger on our way home as we were both very hungry. The food tasted awful to me... part of the seizure activity manifestations. 

Christmas was a non event. We had a small turkey and had a nice meal. No decorations for the cats to enjoy. No visits or invitations to visit. But for the kindness of a few of my internet friends there was no indication that anyone cared. I had managed to do some baking, build a feast. We watched a Dr.Who marathon on TV, and the Christmas special. It was all that I had the strength to manage. More than I had the strength to manage as I crashed badly for the next two days.

Now the year is at it's end. Three more days and it's gone. Dead and gone. 

It ends far better than it began, even if I am living out of my bedroom just as I did at the start of the year. The struggle continues. Life is a struggle, then you die. 

Pain Poem.

Pain Poem

arrgh... owy... ~sigh~, oh well
My hip is giving me more hell
It hurts to sit, it hurts to stand
It hurts to walk
It hurts to lay on my side
Stairs cause me to stifle a scream.

owy, owy.. whimper, ~sigh~
And thus another day goes by
Not focused upon what I may do
Not upon what I may try
Not focused upon where to go
Reducing pain becomes the only goal.

~sigh~, owy. ow, oh yeah,
I still need to cook a meal today
I still need to figure out a way
I still need to get up
I still need to move
But once the pain spikes I'm lost.

yip, yipe...owy, oh
What to do I do not know.
In the pain I cannot think
In the pain I cannot rest
In the pain I cannot move
I am lost in the pain.

~ phyllis griffiths, 2013